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Any Insight Please. I'm So Desperate...


Sheri Lynn
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About eight months ago I began feeling very tired, uncontrollably sleepy. Since then symptoms have developed pretty quickly and stayed with me. Symptoms are : excessive sleepiness,falling asleep at random times, dizziness, sleepy esp after eating, freezing cold feet and hands, intolerance to temp changes, vertigo especially in elevators or on stairs, lapses in memory, tachycardia, wide swings in Np (ita usually low), shortness of breath, tremors, weight gain. I think that covers most of it. I've seen a neurologist who said I have mild sleep apena bit it wouldn't account for all my symptoms, an endocrinologist that found nothing and had all blood work come back normal. Waiting on results of Lyme test and third thyroid blood test.

My pcp thinks it may be POTS and I see a cardiologist on Monday.if that comes back normal she may send me to Vanderbilt dysautonomia clinic. I guess I'm just asking if this sounds familiar, like pots? I'm so ready for answers, I'm about to just give up... Thank you

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Hi Sheri Lynn,

Welcome to the forum. I really feel for you. I experienced all of the symptoms you mention plus some others and it took a long time to find someone who could diagnose me properly. It was very scary to feel so ill and not have the docs know what was wrong with me.

I, of course, can't diagnose you but it sounds like some form of dysautonomia is a possibility. A tilt table test is the gold standard for diagnosing POTS, as well as some other forms of dysautonomia.

If you don't mind telling us, did your neurologist send you for both nighttime and daytime sleep studies? I have had both as I was sleeping about 20 hours a day when I first became ill and was still exhausted. It turns out I have severe daytime hypersomnia and they were able to rule out narcolepsy. It is an important bit of information as there are different treatments for each. I also have other sleep issues, although apnea is not one of them.

Not all cardiologists are familiar with dysautonomia so you may need to seek out a cardiologist or neurologist that actually have a subspecialty in dysautonomia. We have a physicians list on our main site. Here is the link. http://dinet.org/index.php/physician-list?view=physicians

Please know we are rooting for you and you are not alone (even though I'm sure it feels like it.)

Take care,

Katie

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Thank you Katie. Yes I had both the nighttime sleep study and the daytime nap study, my nerouligist was Sure it was narcolepsy but it wasn't. My pcp wanted him to do a tilt table test but he immediately said it wasn't pots as soon as I mentioned it. I'm unsure if the cardiologist is familiar with dysautonomia, probably not since most aren't. I'm hoping if all else fails I'll get answers at Vanderbilt, I'm reading that there a leading authority. Thank you so much for letting me know you had similar symptoms. The excessive falling asleep was making me doubt pots because it isn't focused on in alot of research. I appreciate you sharing and taking the time to respond!

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There is actually some theory behind why people with pots sometimes have hypersomnia. I will attach the article but basically there is a study showing that pots patients have alpha waves (awake brain waves) regularly intrude on their sleep waves (delta waves.) This constant intrusion causes pots patients to get very little restorative sleep. For example, I only get about 18% of my sleep time as restorative sleep. I am told you are supposed to get 50% or more restorative sleep. Thus, the docs think this is the cause of my hypersomnia in combination with the tachycardia causing even more exhaustion.

http://m.neurology.org/cgi/content/meeting_abstract/80/1_MeetingAbstracts/P03.038

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Hi Sheri, I tick every one of your symptoms except falling asleep easily and weight gain. I have had CFS/ME for 11 yrs and Pots the last 4. I hope u can get dome answers. For me the dizziness, vertigo and fatigue are the worst symptoms.

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it takes a while to get the right diagnosis unfortunatelly ..the first cardiologist i went to basically told me i was lazy and need to exercise more also..i thought my hiusband was going to deck the guy..i weighed 140 am 5'6..was a nurse full time running a Alzheimers unit as well as geriactric psych unit on my own with 2 nurses aids for over 50 residents....and trust me that was WORK.. and was raising 6 kids..now tell me how i could of been lazy ..it took over 10 years to be diagnosed....i do exercise some mostly just stretches on my bed if i try to exercise standing up i end up on floor anyway..LOL..so i dont even try anymore..i have a great cardiologist and primary care doctor right now so i am blessed..but still a lot of uncertainties since they are still so unsure how to exactly treat this it is just basically treat the symptoms as they arise..good luck and best wishes

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I went to my cardiologist today and should have results Wednesday. He did a stress test before I left and told me that it appeared my heart rate and blood pressure were close to where they should be. Before this however he looked at my blood pressure and heart rate log ( pulse 109 sitting then 121 after standing two minutes then 133 after ten minutes standing is one reading) I told him my primary care doctor was thinking POTS and he thought that was a real possibility! I'm wearing a holter monitor until Tomorrow morning. Uggghhh I just want some answers!

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Hang in there Sheri Lynn!

I am somewhat of a newby to POTS myself and can relate so much to

many of your symptoms including hypersomnia, weight gain, tachycardia

low BP, and the most fun of all fainting. . I remember that

desperate feeling of just wanting to know! Sounds like you re on the

right track .

Don't give up and remember to keep fighting for yourself- especially if your cardiologist

is wishy washy about diagnosing you. The cardiologist I see now is wonderful

and very knowledgeable about POTS and the like. However, I went through

3 cardiologists and a neurologist before I was directed to him. It was only

four months but seemed like an eternity.

Please let us know how it goes:)

Glad you are reaching out!

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It takes a village... And a good historian. Write down whatever you can think of for your appointment. Docs are good at picking out the wheat from the chaff so to say. I got my testing and diagnosis quick... But then then didn't know what to do with me from there... So off to a specialist. You have a soft place to land with us and a place to vent and regroup.Blessings!

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Hi Sherri Lynn. Am sort of in the same boat with many of similar symptoms( but not all) and without a diagnosis. I have an ep appointment feb 19th and with Cleveland clinic April 25th. hang in there and hope you get diagnosis and treatment soon. For now, am recording a lot of data on BP, pulse and symptoms in preparation for appointment and trying hard to stay positive.

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I've finally got an appointment with a dysautonomia spealist in bowling Green ky on March 11. It's just a consult at first but at least it may get me a bit closer to the right tests/diagnosis. I've felt horrible today dizzy tired nausea shaking... Not sure if I'll even get an accurate test result since the cardio started me on a beta blocker? Thanks for the answers and I sincerely hope each of you find answers and treatments that will help you

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When I had my second tilt test (conducted by my POTS neuro), it was about 2 months after my first. My cardiologist that had sent me for the first one is not a dysautonomia expert but knew enough to start me on beta blockers and get me to the specialist. The POTS neuro met with me once for an initial consult and set up my 2nd tilt test at that time. He reviewed my meds and told me which ones to stop 5 days prior to the test.

If this doc sets you up for testing, ask him what to do with your meds prior to the test (in case he forgets).

So glad you're making progress with the docs!

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